The tale of: a parasite infection of my body and brain; how "friends," family, and medical professionals helped contribute to it largely destroying my life; and (reflections on) what I've done and has happened to me since then.

Tuesday, December 24, 2013

How many other people continue to be similarly misdiagnosed?

As many are discovering, it is wonderful to connect with people who had or are having similar (nightmare) health(care) experiences. Dolly Parikh recently informed me of another such person who had experiences similar to mine: "Your blog and story has provided a lot of encouragement and tips for her and she looks up to you like a celebrity and her hero."

"Celebrity" and "hero" are labels I would apply to yet another person who had experiences similar to mine: Susannah Cahalan. In the book, Brain on Fire: My Month of Madness, Susannah details the struggles she had with a U.S. healthcare system that misdiagnosed her illness several times, including wanting to lock her up in a mental facility as a schizo-affective. Fortunately, Susannah's family and boyfriend fought what they considered to be misdiagnoses, and she was eventually correctly diagnosed with a rare autoimmune disease that attacked her brain.

Susannah was lucky. "Right time, right place." But, "we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s." The first neurologist she saw...

"...considered one of the best neurologists in the country, had never heard of (the disease I had). ... While he may be an excellent doctor in many respects, (he) is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It's a bad system. (He) is not the exception to the rule. He is the rule.

I'm the one who is an exception. I'm the one who is lucky. I did not slip through a system that is designed to miss cases just like my own -- cases that require time and patience and individualized attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasn't the really shocking part: I realize now that my survival, my recovery -- my ability to write this book -- is the shocking part."

I did slip through the system designed to miss cases like my own, so my survival, my recovery is perhaps even more shocking. Many don't make it. As Susannah states, "If it took so long for one of the best hospitals in the world to (diagnose my illness correctly), how many other people (are) going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?"

Reading Susannah's book was an emotional experience for me. So much of her experience of her illness and the healthcare system was similar to mine. Susannah writes, "I believe this book has lent many people legitimacy to their suffering. I've given them a name for what ails them, and for others who still don't have a name, I've given them hope."

If your experiences have also been similar to mine, read Susannah's book, check out Susannah's website, and consider giving me a holler. Hang in there; there is hope.

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(Thanks to Katie McCurdy for recognizing the similarities between my experiences and those of Susannah, and for sending her copy of the book to me.)